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  • Anonymous
      Post count: 93172

      My 21-years-old daughter is scheduled for surgery on 5/24. After taking medication for 13 months, being off medication for 10 months, and having to go back on medication again, her endo recommended surgery in part because of her age. When we had an appointment with her surgeon, he said that 21 was the cusp of when RAI is even considered instead of surgery.

      If you aren’t happy with your doctor’s recommendation, you should get a second opinion and find out the reasons behind their recommendations.

      Anonymous
        Post count: 93172

        For those of you who have had surgery, did your doctors advise against it in the beginning? It seems like most of you are saying it was the best decision for you, so I’m wondering why my current doctor and the one I had before were both so against surgery. They both told me that it’s only used as a “last resort” and that I wasn’t really a candidate for it because I’m so young (I’m 22). My current doctor is telling me to choose between RAI and staying on tapazole, and didn’t even mention surgery as an option. I’m wondering why he would do this, and also if anyone else has experienced this. Thanks so much, and I hope everyone is doing well today.

        Shenley :)

        Anonymous
          Post count: 93172

          My Endo has also suggested I do RAI treatment. She totally pushed away from surgery and said there are too many risks but did not give me what they were. I will surely ask those questions my next visit. I told her my last visit that I would consider doing RAI in June, but I am still very nervous about it and haven’t made it “final” yet.

          Anonymous
            Post count: 93172

            I am not completely sure why the Endo’s are all so against surgery. I think there is a number of reasons. First RAI is the prefered treatment. It is invasive and requires not hospital stay it is done completely out patient and the recovery time is very quick. They problem as I see it is that almost everyone that I have talked to has had to go through it 2-3 times and often even after that it doesn’t work. I think it’s hard to get insurance companies to agree to the cost of surgery and much easier to get them to sign off on RAI.

            Do not be mislead. While I am so tickled that my surgery is complete and I am feeling better and better every day. It was no picnic. I can see where if you did not get a very good qualified surgeon you can have some additional massive problems that rival Graves. If they nick your vocal cords you will be perm horse. If they accidentally cut any of the nerves in the neck you can have perm numbness in your face/neck. loss of muscle control in parts of your face. If they damage or fail to get your para thyroid glands transplanted you will have severe low blood calcium which can cause irregular heart beats, heart attacks other issues. From a statistic stand point there are tons more that can go wrong with surgery than with RAI. Doctors often are looking for the approach with least risk which is understandable. I think these are all reasons why they shy away from surgery in favor if RAI.

            My endo was VERY against surgery. After my 2nd RAI treatment failed. He wanted to do it again but said it was my call. I opted for surgery and he refered me to the very best surgeon he knows. I was lucky and was in a very renoun teaching hospital that has some of the top surgeons and doctors in the area. Even if you have quite a trip to find such a location covered by your insurance. Find one. In the long run it will be well worth your time if you opt for surgery. Also, if you are going to do RAI work with your endo and make sure the dose they are going to give you will OBLITERATE your thyroid. Graves is an auto-immune disease. Your bodies antibodies attacking your thyroid is what causes it to grow and produce more hormone. Some doctors just want to damage the thyroid a little to try to pull you within normal range. This most often does not work. Work with them and make sure you are working for a kill not a damage. The most radiation they can give you on an outpatient basis is 30 Millicuries. My first kill was only 7 Millicuries they wanted just to injure it. It just made it grow to twice it’s size and raised my levels dangerously high. My second which was a true kill was 28 millicuries. It did a lot of damage but it still survived and I finally had it taken out. Probably if we polled the group. People that the Endo went for a complete kill the first time are the ones that have had success with RAI.

            These are all things to keep in mind when you decide on what treatment is best for you.

            Anonymous
              Post count: 93172

              You can always get a second opinion (or, a third opinion). My endo would not do surgery on me because I had heart palpitations for over 6 months when hyper. Said it was too great a risk. There can be complications with the parathyroid glands, which lay behind the thyroid gland, and/or problems with your voice box. Usually really enlarged glands or those with potentially cancerous nodules are the ones they must take out (I think). Remember, get the recommended books on this disease – educate, educate and then read some more!!! It really helps. Joy in NoGA mtns.

              Anonymous
                Post count: 93172

                Thanks Egerety for sharing! Very well put and it sort of eased my mind a bit about choosing. I guess we all would like the “easier softer way” to do things in life,particularly about this graves disease, but it does not always work out the way we want it. Mostly for me, I am not so good with “change”, especially of something of the “unknown” but you helped me see a little bit clearer today! Thanks!

                Anonymous
                  Post count: 93172

                  I too am young, 29 years old, but my endo was not against my having surgery. Actually, since I am seriously considering another pregnancy, he was all for me having surgery. Everything went great, I feel like a million bucks. Recovery time was minimal, I was out of work less than 1 week and I have a very strenuous job, lifting 100 lbs or more often. So, not all endo’s are against surgery.

                  Anonymous
                    Post count: 93172

                    Thanks so much for your post. I too have a strenuous job and was considering surgery over the RAI. Your response has helped me to make the decision to lean much more to surgery. I was wondering about the recovery & length of time out of work. If mine would go that well, that would be fantastic.

                    Val

                    Anonymous
                      Post count: 93172

                      Why do doctors put people through all this RAI treatment wouldn’t it be easier to remove the thyroid gland and just take thyroid replacement medication instead?
                      Maria

                      Anonymous
                        Post count: 93172

                        I have wondered this also. What I have read indicates that surgery is used primarily for patients with thyroid cancer or nodules etc. Apparently there a risks related to vocal cord damage so it is used less often. I don’t know much, but that’s what I know. It is frustrating isn’t it.

                        Anonymous
                          Post count: 93172

                          Why do doctors recommend RAI over surgery? It is generally medically safer in most cases. Surgery not only has additional risks of adverse side effects (damaging the vocal chord nerve, damaging the parathyroid glands, infection) but surgery can be dangerous unless thyroid hormone levels are well-controlled. We had a post just this week about a woman being sent home without a surgery, because her doctors discovered hyperthyroidism in the pre-surgery blood test. She was told she needed to get her hormone levels controlled before they would attempt the surgery. Modern surgeons have techniques that they did not have when RAI was first developed, obviously, but people frequently died during the surgeries long ago due to complications which arose due to hyperthyroidism. Surgeries are probably safer than they used to be, but when our doctors weigh the risks and benefits of one procedure over another, RAI still appears to be safer than surgery.

                          But if you expect surgery to instantly make you feel better, you will probably be disappointed. Yes, a significant percentage of the gland is gone instantly, and you can start replacement sooner. But you still need time to heal. Don’t expect to feel “normal” right away with surgery, either.

                          Bobbi — NGDF Online FAcilitator

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